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Despite all the talk, demo projects are rare
Valuable lessons are going unlearned
By Larry Beresford
Even though hospice care touches the lives of more than 800,000 Americans with life-threatening illnesses and their families per year, many critics have questioned the dominant payment mechanism for such care, the Medicare Hospice Benefit, which was implemented 20 years ago this November.
Some have challenged provisions of the Medicare benefit, such as its eligibility threshold of six months or less to live and its tendency to force a "terrible choice" on vulnerable patients, which can have the result of blocking access for people in need of the only large-scale health benefit explicitly designed for end-of-life care. Some have even suggested that the benefit is fatally flawed and in need of replacement by new models of palliative care.
Others in the hospice community want flexibility to experiment with adjustments to the benefit that could permit hospice providers to meet more of the needs of patients who may not be eligible, appropriate, ready for, or open to hospice care as currently defined by Medicare. They point to untenably short lengths of stay in hospice as proof of the need for alternative approaches that would allow more patients to access hospice care sooner.
In fact, a number of seminal reports on end-of-life care in recent years have called for hospice demonstration projects. These could involve testing in the following areas:
But where are the hospice demonstration projects that have been recommended in these policy reports? Where are the federally funded experiments that could generate empirical answers to the concerns that have been raised about the hospice benefit?
Need for adjustment?
In its 1998 report, the Committee on the Medicare Hospice Benefit and End-of-Life Care of the National Hospice and Palliative Care Organization (NHPCO) in Alexandria, VA, concluded after a year of deliberations that the Medicare Hospice Benefit as it existed was "fundamentally well designed" and mainly just needed to be better utilized by providers. But the committee also recommended testing other eligibility criteria, along with examining the impact of alternative payment methodologies and disease-specific case management models. One of its most urgent recommendations was to explore alternatives to the six-month prognosis.
In March, a report titled Access to Hospice Care: Expanding Boundaries, Overcoming Barriers was released by the Hastings Center and the National Hospice Work Group. The report recommended that Congress approve demonstration projects to improve access to hospice care. These demonstration projects would advance hospice access for patients who don’t yet qualify for traditional hospice care and would promote access to hospice’s end-of-life competencies for other patients through new community partnerships, such as with PACE projects.
Last September, in a briefing held at the U.S. Senate, the Robert Wood Johnson Foundation’s Promoting Excellence in End-of-Life Care initiative called for federal demonstration projects to more thoroughly test and analyze some of the exciting preliminary results emerging from the 22 Promoting Excellence grantees — often on shoestring research budgets.
According to Promoting Excellence Program Officer Ira Byock, MD, these demonstration projects showed that it is possible to increase access to and quality of end-of-life care without increasing overall costs. They also successfully introduced hospice or hospice-like services earlier in the disease trajectory for patients still receiving life-prolonging therapies.
"Demonstration projects are a means to an end — a wonderful way of expanding the realm of what is possible," Byock says. "They explore the feasibility and acceptability of new ways of doing business. They expand health service delivery models. I think there are critical issues from both a public health and a hospice business perspective that need to be tested."
The public health issues are related to access to care as well as the efficient use of health care resources, he says. "But there are also great business opportunities for hospices to open new markets and reach new populations of patients." This could include safety-net systems, children, patients with HIV or end-stage renal disease, cancer patients on experimental therapies, and other groups that hospices historically have had a difficult time reaching, he says. Hospices can either complain about the structural access barriers that stand in their way or build new models to overcome those barriers, Byock adds.
So where are they?
So where are these hospice demonstrations that so many have called for? Some critics have questioned whether the U.S. hospice community is truly open to testing new approaches that could lead to significant changes in the Medicare benefit.
Even recognizing that the current regulatory and reimbursement structure has produced the extremely short lengths of stay now challenging many hospices, some in hospice may feel that the devil they know is preferable to opening a legislative Pandora’s Box that could alter the fundamental terms of end-of-life care in unexpected ways — perhaps even replacing hospice with a new provider type.
If the legislative process opens up the definition of hospice care to reconsideration, would other constituencies rush in with their own counterproposals? Also, are America’s hospices prepared to deal with the ambiguities of caring for patients still receiving aggressive therapies or unwilling to commit to a purely palliative approach?
Among those who doubt the eagerness of hospices to experiment with solutions to the identified access barriers is Joanne Lynn, MD, of the Washington Home Center for Palliative Care Studies in Washington, DC. Lynn is the author of another end-of-life policy proposal called "MediCaring" (www.medicaring.org/). Lynn currently is working with U.S. Rep. James Oberstar (D-MN) on a bill titled "Living Well with Fatal Chronic Illness Act of 2003," which contains some of Lynn’s ideas for end-of-life demonstration projects. Also, she’s working with the District of Columbia Medicaid office on a home- and community-based waiver program for medically complex patients.
Lynn doesn’t see much in the works in terms of hospice demonstrations, and, as a result, hospices may not have the research data they will need to develop to meet new opportunities or challenges. She says she wonders if the hospice community is suspicious of policy research, not to mention innovation and demonstration projects, because of fears that these endeavors could threaten hospice’s current dominant line of business.
"People are very concerned to preserve what they’ve already got, rather than putting the best interests of patients first, which clearly would mean trying out other models as quickly as we can," she says. "Out of such experimentation might come all kinds of insights and innovations. Some may be contrary to the short-term interests of hospice per se but might be better for patients and families in the long run.
"Is there a better model [than the hospice benefit] that would serve more people with life-threatening illness or integrate better with the rest of the health care system? I’d say there’s a good chance that there is."
Clearing the decks
Those who say the hospice community is reluctant to test alternative models of access or care may have misunderstood the industry’s careful approach to policy change, suggests Donald Schumacher, PsyD, president and CEO of the NHPCO. Hospice advocates have been busy in recent years seeking rate adjustments to the Medicare Hospice Benefit and pushing for the Centers for Medicare & Medicaid Services to release long-awaited revisions of the Medicare Conditions of Participation and to address other regulatory concerns, even drafting a hospice palliative care consultation benefit.
With many of those issues — along with the prescription drug benefit in Congress — finally making their way toward resolution, the NHPCO has set the stage to move on its current top priority: hospice demonstration projects. "Now that we have cleared the decks, this is our next stage," Schumacher says.
NHPCO working toward legislative proposal
The Legislative Subcommittee of the NHPCO’s Public Policy Steering Committee has catalogued and is about to start reviewing the various models that have been offered for hospice demonstration projects, with the aim of pulling together a specific legislative proposal before the end of the year. "We are in the process of developing specific initiatives to test different eligibility models and services in a number of different care settings. There is a range of topics we want to test, and we’re now in the midst of developing the enabling legislation," Schumacher says.
NHPCO’s aim is to present Congress with a comprehensive list of ideas to be tested and approaches for testing them, including eligibility strategies and payment mechanisms.
"We take seriously our charge to increase access for patients and families," Schumacher says. "If we are going to approach this issue, we think it needs to be comprehensive and far-reaching. We don’t want to reinvent the wheel, but rather improve what we have now."
The goal for these proposals would be to find ways for existing hospice programs to serve more patients in different ways and for longer periods of time.
The NHPCO would like to see quick action on its demonstration package, although that may not happen, especially if Congress decides to take a breather on health care issues after wrestling with the prescription drug benefit this year. Even if the NHPCO produces draft legislative language before the end of this year, Congress may not take up hospice’s proposal until 2005 or later.
Allowing for time to write implementing regulations, award contracts, test the demonstration models, and analyze the data, it could be a long time before any of these experiments generate meaningful answers and new directions. Can America’s health care system and hospice industry — or dying patients and their families — wait that long?
[Editor’s note: A variety of end-of-life care demonstration projects funded by Promoting Excellence in End-of-Life Care will be profiled at the National Hospice and Palliative Care Organization Management and Leadership Conference, to be held Sept. 6-9 in Phoenix. A seven-session track titled "New Models, New Markets" will highlight results, replicable models, and business opportunities, and will address how to move hospice care upstream. "Hospice Trends" columnist Larry Beresford will be covering the NHPCO conference for HMA. If you’d like to arrange to speak to him in Phoenix to share your questions, ideas, and suggestions for future columns, contact him in advance at (510) 536-3048 or at firstname.lastname@example.org.]